We are now three months past the end of treatment and life is going well.
Cydney has been gaining energy, stamina and weight. At her clinic visit this week she weighed in at 36 lbs, up three pounds from the end of treatment day! She has a great appetite most days and is continuing to try more and more foods. She is still on tube feedings overnight to keep the calories coming. She is ready to have it taken out for good. Next step is to get her to be able to swallow a pill and take her meds orally.
The set of scans following the last chemo day were clear and we go in for more next month when we return from our trip back to Oklahoma. I have to say though the nurse practitioner that called needs some phone call training. He was stumbling over words, making pauses before he said things at important moments in the statement. My heart dropped and stomach was in knots before he got out "scans show no recurrence, they are clear."
We met with a neurologist who will follow Cydney's progress and monitor her seizure medications. Right now we will stay on the meds and this spring reevaluate the need in hopes to taper off and end the meds. Cydney has not had any seizures since being in the hospital in Phoenix and shows no signs of having them. The doctor would like her to be seizure free for 18 months, before discussing any changes.
We also saw and ophthalmologist, the eyes look great and there is no evidence of damage. We go back in February. There was concern of some possible optic nerve damage, based on what an ophthalmologist had seen while she was in Phoenix. We got a second opinion due to Cydney being no verbal or very responsive at the time of that initial exam in Aug 2017.

Her new AFO's (leg braces) were completed. From the day she was able to get them she was eager to stand and walk. They are comfortable now and give her the support she needs to stand and take steps on her own. Her foot drop is pretty severe, causing her feet to point downward and not have the range of motion needed to be flat on the ground. The tendons in the heel are tight and need to be stretched. These braces do this for her, they are built with a wedge on them. As the tendons stretch and the range of motion increases she can get the wedge taken down and eventually out completely. Cydney is also able to wear a soft pair at night to keep the foot in the proper position. The alternative to not wearing the braces and getting the issues fixed this way would be surgery and serial casting. Not something we would like to have happen if we can help it, so the braces will be worn. Thankfully they are comfortable now and not a fight to get her to wear them.
Cydney continues to attend therapy sessions two days a week. Working on her standing, walking, being able to bend down to pick items off the floor, put items back on tables or shelving, transferring in and out of the wheelchair, as well as to gain confidence in using her walker.
Her school days remain at 3 a week, with next week extending her time in school to include lunch time. She has been asking for this for several weeks now and we were waiting on a swallow study to be completed. Now that this is done and she is cleared to eat a variety of foods by mouth she is able to stay through their lunch time followed by a little more class time before I pick her up at 1230.
Cydney has completed her first semester of Therapeutic Horse Riding at TROT. This weekend will be her final show where she can demonstrate the skills she has learned. We look forward to returning next semester.
Next up on our calendar is a trip to Tulsa, Oklahoma for Christmas! We are all excited to get back and to see all the family and friends who have been sending love and support our way over the past 18 months.
We would like to wish everyone Happy Holidays and a Wonderful New Year. Thank you for the continued messages of support, thoughts and prayers, love and encouragement sent Cydney's way. She loves to see the cards, messages and to just hear that so many people from around the World are cheering her on.
